You Never Give Up Hope in Life

ENERGY IN ACTION - EPISODE 050

You Never Give Up Hope in Life

Devon Gottfurcht shares her experience and journey with a mitochondrial disease called chronic progressive external ophthalmoplegia (CPEO). Her message is one of redirection, personal advocacy, perseverance and never giving up hope. 

EPISODE HIGHLIGHTS

When did you first experience symptoms?

It started with extremely dry eyes, light sensitivity, infections and other eye issues. Initially my eye doctor wasn't sure what was causing my symptoms. One day, I couldn't see and went back to see my eye doctor where I received a referral to a cornea specialist. I was referred to another specialist for a biopsy and received a diagnosis of a mitochondrial disease called chronic progressive external ophthalmoplegia (CPEO). 

How was your wedding centered around mitochondrial disease?

Watching a sports program one day, I noticed Ken Rosenthal was wearing a mito bow tie. I wrote to him, introduced myself, told him I was getting married and that I noticed his bow tie. I ordered the same bow ties for the men in the wedding party and the bridesmaids wore green dresses. During the wedding, my nephew spoke about the meaning of the bow ties and the disease they represented. My wedding was one of the best days of my life, I felt great and I had the wedding of my dreams. 

What has life been like since your wedding?

I have since begun having issues with my legs and my disease has now spread to my legs and arms. I've been forced to slow down. I had to mourn the loss of my career and success. But I work from home for my husband's law firm now and I'm finding my purpose despite CPEO and its progressing effects.

RESOURCES & LINKS MENTIONED

Bride Raises Mito Awareness

https://www.mitoaction.org/bride-raises-mito-awareness/

Luna

https://www.getluna.com/

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